Rare Disease Day
Rare Disease Day is observed every year on February 28 or on February 29 in leap years. It shines a spotlight on rare diseases and the challenges faced by those living with them.
The initiative seeks to improve access to treatment and medical support while empowering families with resources to better understand these conditions and care for their loved ones.
With around 7,000 rare diseases identified worldwide, awareness remains limited, and treatment options are often insufficient.
By raising public knowledge and advocating for change, Rare Disease Day organizers strive to create a more inclusive and supportive world for those affected.
History of Rare Disease Day
Rare Disease Day started on February 29, 2008, coordinated by the European Organization for Rare Diseases (EURORDIS) and held in several European countries and Canada.
The date was chosen because February 29 is a “rare day,” and 2008 marked the 25th anniversary of the Orphan Drug Act in the U.S. This law aimed to support the development of treatments for rare diseases.
On this day, people participated in activities like walks, press conferences, fundraising events, and writing letters to government representatives to raise awareness about rare diseases.
Health-related organizations around the world also organized events. In Europe, the European Parliament held a session to discuss policies for rare diseases. Leading up to Rare Disease Day, there were meetings with policymakers to talk about issues like equal access to prevention, diagnosis, treatment, and rehabilitation.
In 2009, Rare Disease Day spread to countries like Panama, Colombia, Argentina, Australia, Russia, China, and the United States.
In the U.S., the National Organization for Rare Disorders (NORD) joined to coordinate the event, partnering with about 180 other organizations.
Many U.S. states issued official proclamations for Rare Disease Day, and over 600 organizations in Europe participated.
In 2010, 46 countries took part, with new countries like Latvia, Lithuania, and some African nations joining the movement. By 2012, thousands of patient advocacy organizations and over 600 partners in the U.S. were involved in promoting Rare Disease Day.
By 2014, the event had grown significantly, with 84 countries participating and over 400 events held worldwide.
New countries, such as Cuba, Egypt, and Kenya, joined in 2014. In 2018, countries like Cape Verde, Ghana, and Syria took part for the first time, making it a global movement with 80 participating countries that year.
What is a Rare Disease?
In the United States, a rare disease is defined as something that affects 1 in 200,000 people.
Unfortunately, this means that there often isn't a treatment for these diseases, or if it exists it is often expensive and inaccessible for many people around the world.
Sometimes there is only one expert on the disease in the whole world, which means that families have to spend a lot of money traveling and paying for expensive treatment.
Rare Disease Day joins the voices of rare disease sufferers together to raise awareness about their burden and uphill battles, in the hopes that there will be more resources and financial support put towards researching and treating these diseases.
How to Observe Rare Disease Day
Even though there have been many efforts to raise awareness about rare diseases, most people are still unaware of them and the struggles of people who suffer from them. Do your part by sharing stories of people with rare diseases on your social media, with family and friends. Do it by using the hashtag #RareDiseaseDayUSA to join your voice with others who are bringing these issues to light.
If you know anyone with a rare disease or would like to help with treatment and research in the future, there are many ways to educate yourself on this matter. In the United States there are big events and activities happening across many states, such as conferences, walks, fun runs, and exhibitions that anyone can attend.
Show your support to the plight of people with rare diseases by donating to NORD, the official US sponsor of Rare Disease Day which provides resources and helps people with rare diseases and their families.
In Canada, you can check out CORD (Canadian Organization for Rare Diseases) for a program of events and activities that are taking place.
